Ileostomy

Are you considering surgery ? Have you had surgery ? Trying to cope with colostomy ? Share your experience with others here.
Sp1unique
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Ileostomy

Post by Sp1unique » Fri Oct 07, 2016 3:51 pm

Looking for some advice and feedback from others who have had to have a ileostomy.

I've been bleeding since April 16 and tried everything to get it under control, my last option before surgery is to now try vedolizumab as an alternative to infliximab. But I'm preparing my self that I may need to have surgery to remove my colon!

I guess I'm just asking for any experiences - good and bad, that people have had and what I might have to expect after surgery and how have people coped with having a bag on the outside and not being able to go how nature intended.

Thanks in advance, slightly scared of having to face this now and if the last option of vedolizumab will work and not give me side effects like everything else.



Karencraig
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Re: Ileostomy

Post by Karencraig » Sun Oct 09, 2016 9:03 pm

Ohh, you are just were I was 5 years ago. A very scary time, but you are doing the right thing and starting to plan.

I'd refused surgery. then started to realise the disease wasn't going away, the flare wasn't stopping, and the drugs weren't working.
The best thing I did, and would advise anyone, do what you are doing, ask questions, get emotionally prepared.
I'd prefer not to have needed a stoma, and I do have moments, but I'm an out and proud ostomate. My stoma has given me my life back. The only thing I cant do is use my rectum. And strangely it feels a lot more natural emptying a bag, and actually seeing my stoma work, than "going" the conventional way. I have a well behaved stoma, so have very little issues. There are people who do, so I wont pretend its easy for everyone.

When you have surgery, use the recuperation time ordering samples of bags. The biggest issue is finding a bag that suits you. Each supplier has a different style, there are 1 piece and 2 piece appliances, all different sizes. there are "accessories" such as stoma guards, tape and paste to give extra adhesion if needed. (I don't)

Get used to the fact you will have leaks - but if you have the right bag you'll manage them, and they are a heck of a lot easier than unwanted bowel movements!!!! At the beginning, you'll get more leaks than you will as time goes on, that's just while your skin settles down, and you find the right bag for you. You can also get prescription underwear which has an internal pocket, or support wear to make the bag more comfortable. I still keep my eye out for new ones, and attend stoma events regularly.

Ostomy products are exempt from prescription charges, but you MUST complete the exemption form at the GPs. It actually exempts you from all prescription charges.

Some people have to be careful what they eat (I try not to eat large pieces of high fibre, and raw fruit as it doesn't break down, it comes out as you swallow it - sweetcorn and peas really aren't worth the effort!).

Output just happens all the time, but there are times when the stoma will be more active than others. You'll get to know your own stoma. Someone described it as a dripping tap -at times mine can be like a flowing fawcet!!

I usually get up once in the night to empty the bag - but again much better than the flying out of bed before an accident.

Plus side, no dash for the loo, if I get a stomach bug the only symptom is very watery output. I haven't felt this well in all my life, and that was before I even started flaring. Loads of energy, not limited in anything. Feel well all the time.

Research your surgeon, getting a good stoma is vital. Get referred to your stoma nurses and find out what level of service they offer, so you are prepared.
I was referred to the colorectal nurse by my IBD nurse who gave me as much time as I needed to ask questions. She put me in touch with a previous patient of my surgeon, and referred me to the stoma nurses. She's still there if I need anything.

Think of a name for it. Treat it as a pet, shout at it when its naughty, clean and change it regularly Feed it appropriate food.

If you search on this topic, a few of us did diaries in about 2012/13 of our experiences.

Keep asking any questions you have. There's never a silly one or too many. Get as prepared as you can before you have it done. Life begins, it doesn't end. And you'll meet a great bunch of fellow ostomates. Reality is not as scary as the thought.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

rogalin47
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Re: Ileostomy

Post by rogalin47 » Mon Oct 10, 2016 2:31 pm

Hi there
I'm so pleased to see you've had a reply from the Queen of this forum. I've said it before and will no doubt say it many more times but there is no one on this forum who talks better sense or gives better advice than Karen.

I can't really add much more to her superb answer other than to say that life with an ileostomy is far superior to life with uc. I had my first stoma in April 2013 and whilst I've had a few hiccups along the way resulting in another op to move my stoma from the right side of my tum to the left just last month, I honestly don't regret one moment of the past three and a half years. There is absolutely nothing you can't do with a stoma other than poop as you currently do. Those awful stomach cramps and mad dashes to the loo will be a thing of the past, you will once again be in control of your life rather than being held to ransom by your bowel.

You are doing exactly the right thing by preparing yourself mentally for this op as you will find it so much easier to deal with it all when the Time comes for you to have a stoma as your head will be in the right place and you'll have no issues with coming to terms with it. The practicalities of living and caring for a stoma are a doddle, yes you will have the occasional leak initially but once you have found the right bag for you they will become a thing of the past. It took me six months to finally settle on a particular bag I had full confidence in which three years on I'm still using. I change it every other day and apart from having to empty it a few times during the day and once at night I forget it's there most of the time. There is a thread on this forum called bags and tips which is well worth reading, it contains some really valuable information and advice on it that I for one have immensely helpful.

Ask as many questions as you can think of, Nothing is too small, too daft or even too rude! You will find there is always an answer to be found on here.


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

Karencraig
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Re: Ileostomy

Post by Karencraig » Mon Oct 10, 2016 7:11 pm

I think that translates as I'm a bossy madam :lol: Calm, clear advice from Rogalin. As usual.
Had forgotten about the bags and tips thread.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

rogalin47
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Re: Ileostomy

Post by rogalin47 » Mon Oct 10, 2016 7:22 pm

Well I guess it takes one to know one! Poor SP1unique has no chance with two bossy madams on his case :lol:

Seriously though, this forum is a real lifesaver. There is always someone happy to impart advice, offer help and tips and even metaphorically hold your hand when needed. :yes: :yes: :yes:


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

philayl63
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Re: Ileostomy

Post by philayl63 » Mon Oct 10, 2016 7:25 pm

Hi, there are a lot of people on this forum that have had to make this choice, some good threads worth looking at, I had to make this choice over three years ago, if you get bored have a look at my posts, there is some information there, I have put the link at the bottom, start about two thirds of the way down the first page, it might answer some of the questions that you probably haven't even thought of yet. Whatever you decide good luck and remember you can ask away on here there are some very knowledgeable people on here. Phil

viewtopic.php?f=24&t=6148



Sp1unique
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What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jan 2012
Location: London

Re: Ileostomy

Post by Sp1unique » Wed Oct 12, 2016 3:02 pm

Thank you all so much for your feedback, advice and encouragement.
So after initially having cold feet and telling my consultant I don't want to do it, he called me in today and organised a chat with the surgeon where I asked a million and 1 questions. He also took me to see the stoma nurses but unfortunately they weren't there. I have to go back next Wed to get my blood results and see the IBD nurse, the surgeon also asked me to pop in and see him to in case i had any more questions and i could meet the nurses. The surgeon and my consultant have asked that i seriously think about surgery as my colon doesn't look in good shape.
The other option is I start 40mg steroids and Vedolizumab infusions but this won't kick in for at least a few months.

I'm so torn in what to do, there are other factors that I guess are blurring my decision- I've now been off work since June and I'm very keen to get back to it and there is also the fact that I will only now get half pay.... which isn't great!
Also, I live with my parents who are both a little elderly and work full time, I don't want to give them the added stress of coming to see me and stressing about me!
I know it comes down to, my life or these other things but I've always been one to put everything and everyone before me and my needs. HUFF!



rogalin47
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Re: Ileostomy

Post by rogalin47 » Wed Oct 12, 2016 4:10 pm

I think we are all guilty of putting our needs on the backburner so to speak and putting other people first but you need to tell yourself that you are seriously unwell and you need to make your health a priority. It's far better to have this operation as a planned surgery than having it done as an emergency. Better for you, better for your surgeon too.

If you are weighing up the timeline for a return to full health it's my guess you will reach this more quickly after surgery than waiting possible months for new meds to kick in.....if they even do and there's no guarantee they will work and you could well end up facing surgery anyway.

Only you know what's the right decision for you, it's not an easy one to make. I had it made for me as I became very poorly and had no choice but to have an ileostomy but I can honestly say I have absolutely no regrets. I am thankful every single day that I no longer have to live with uc or all the daily drugs and enemas I was taking with all their horrid side effects too

Recovery from a planned colectomy should be fairly straightforward, I returned back to work after two months off stronger and healthier than before.


21 years of evil UC over on 6th April 2013, welcome to Norman the stoma whose given me my life back!!

Karencraig
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Posts: 1596
Joined: Fri Apr 15, 2011 9:51 am
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 08 Jan 2010
Location: Rochdale Lancs

Re: Ileostomy

Post by Karencraig » Wed Oct 12, 2016 6:29 pm

Your surgeon sounds great. Just the type of support you need.
Keep making those enquiries. You'll decide if and when the time is right. you'll know.

Agree with absolutely Rogalin says.
You say about your parents worrying about your health. At the moment you are ill, and off work.
I had stumbled through continuous flares trying to stay in work, the last 6 months I was too ill. 8 weeks after surgery I was ready to go back. It was 12 weeks, but only because of a delay going to see HR. I felt better immediately after surgery. BUT if you do go for it, don't be fooled by the well feeling, take it easy, enjoy the recuperation, take time to get used to being well. you would be recovering from the illness, not just the surgery. Getting used to your new set up, and trialing bags, and how food reacts with your stoma.

BUT the choice is yours and only yours. You will decide for yourself. But keep asking questions.


EX UC sufferer,surgery on 1 March 2012!!! Marvin (Stoma) became my life enhancer.

Sp1unique
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Posts: 4
Joined: Thu Oct 06, 2016 4:32 pm
What is your status: Colitis Sufferer
Date first diagnosed with IBD: 01 Jan 2012
Location: London

Re: Ileostomy

Post by Sp1unique » Thu Oct 13, 2016 9:17 am

So after A LOT of talking with family and a few tears I have decided to go ahead. My life, well I have no life at the moment but hopefully it will be better after surgery.
I'm meeting the surgeon again next week to ask more questions and to meet the stoma nurses - loads of questions for them. Hopefully they can fit me in, in the next few days after.
I'm feeling a lot more emotionally positive about the whole thing now, I think initially it was a bit of shock and 'no way can't do it' but once the rational part of me took over, calmed down and got the answers I needed I think this is the only and best and actually the only option.
I also spoke with work and actually I'm not that stressed about them, like you say this is my health and what's best for me and me alone!

I'll keep you both posted on how I get on next week and when my surgery (eekk) is due.

Thank you 'my two bossy madams' :lol:

Shalini. X



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